I'm in desperate need of advise. My daughter georgina was diagnosed with SM (T2-T12) 3 years ago, as well as a Arachnoid Cyst in the front temp lobe. She also has fusion C1-C3. Is this combination normal? Is the syrinx due to the arachnois cyst? She is having behaviour changes, she has a colostomy and is bladder incontinent. She has these rage attacks that we can't seem to stop. the drs say that she is doing it for attention???????????? We don't believe she is. I'm at my wits end, and I don't know what to do or where to go. I just seem to be getting the run around here in Australia - maybe because it's rare?? Please any help advise would be appreciated.

Do you have a psychiatrist or psychologist who can evaluate her? It is not uncommon to have an overlap of depression and anxiety with a chronically ill child. You might want to look for a therapist who will help her cope with these challenges. I doubt highly she is doing this for attention- aggresive behavior can be brought on by chemical imbalances or even a reaction to medication. I think a consult with a psychiatrist is a good idea.

I remember before my daughter was diagnosed w/SM/CM she had incontenince. She was 15!! That was the final straw for me. I went into the doctor's office that day crying about it and after examining her and getting her complaints, he family doc sent her for an MRI which showed the syrinx.